One Last Post

[[Ap...]]

Good morning,

 

I have decided to leave this site because I'm really finding it quite unhelpful and somewhat disconcerting.  Too many forum rules are being stretched or broken, and those in long-term recovery do not seem to be responding and/or helping those in early withdrawal or during tapering.  There are too many posts that seem to end up in a 'show of one-upmanship' whereby each post seems to want to 'best' the next.  As well, I've seen too many amateur diagnoses and blatant unsubstantiated advice being thrown around on here.  That's just dangerous.  The one thing I've noticed the most is that people keep saying there are no studies or information on benzos and withdrawal for one to get any idea what WD symptoms are or for how long these symptoms last.  I have news.  That's incorrect. 

 

The average length of withdrawal symptoms reported by those 156 participants (45%)

 

One site, in particular, answered a lot of my questions. 

 

Here is a comprehensive list given regarding benzo withdrawal:

 

from: https://www.kevinmd.com/blog/2018/03/10-tips-help-patients-benzodiazepine-withdrawal.html

Common Benzodiazepine Withdrawal & Post Withdrawal Symptoms

by Benzodiazepine Information Coalition | Oct 9, 2017 | 20 comments

 

Thousands of people could not possibly invent the bizarre, yet similarly reported, symptoms caused by the therapeutic use of benzodiazepines and reactions to their withdrawal. The following list of symptoms was compiled from existing symptom lists and also with contributions from the individuals who have suffered and endured benzodiazepine withdrawal syndromes themselves.

 

Abdomen Cramping & Distention

Achiness

Aching jaw

Aching joints

Aching muscles

Acute hyperexcited state

Aggressive behaviour

Agitation

Agitated sight

Agoraphobia

Air Hunger

Akathisia

Allergic reactions

Allergic reactions to/Intolerance of foods previously tolerated

Allergy & nasal symptoms exacerbated

Anger

Anhedonia

Anorgasmia

Anxiety

Apathy

Appetite – either loss of, or voracious appetite with constant desire to eat

Arms and legs feel detached from body

Ataxia

Band around head

Bladder Incontinence

Bleeding between menstrual cycles

Bleeding from the nose

Blepharospasm

Blood Pressure Issues (High or Low)

Blurred Vision

Body Temperature Fluctuations

Brain Fog

Body odor

Bradycardia

Brain moving within the skull sensation

Breasts (heavy, over-sensitive, swollen, enlarged, painful)

Breathing difficulties

Breathlessness

Bruxism

Buildings appear to be leaning

Burning along the spine

Burning Sensations on Skin

Buzzing, burning, tingling limbs

Changes in perception (faces distorting and inanimate objects moving)

Changes in skin color, tone, texture

Chemical Sensitivities

Chest tightness

Chills

Choking

Claustrophobia

Clumsiness

Cognitive impairment

Confusion

Constipation

Cracked and sore lips

Cramping in stomach

Cramping of the muscles

Craving for sweets and sugary foods

Crying Spells

Cuts and abrasions taking weeks to heal

Dark circles under eyes

Decaying teeth and gums

Dehydration

Delirium

Demented and murderous thoughts

Dental Pain

Depersonalization

Depression

Diarrhea

Difficulty swallowing

Disorientation

Dizziness

Double Vision

Dry Retching

Dry throat, sore tongue, and thrush

Dyspepsia

Dysphagia (difficulty eating or swallowing)

Dysphoria (inability to feel pleasure or happiness)

Dyspnea (breathing difficulty)

Dystonia

Earache and sinus problems

Edema

Electronic Zaps

Emotional Blunting

Epileptic Fits

Esophageal Spasms

Esophagitis

Excitability

Exhaustion

Extreme cold

Extreme thirst

Eyes – sore, tired, seeing floaters, spots, itchy, red

Eye Dryness

Facial Numbness

Fear (terror)

Feces (abnormal looking)

Feeling of extreme heat or cold

Feeling of impending doom

Feelings of shaking inside and out

Feeling of shame

Feelings of unreality

Feelings of worms under scalp

Female ejaculation or incontinence during orgasm

Fingernail problems – median nail dystrophy (line/ridge down the centre), ridges

Flashbacks

Fluctuations in blood pressure

Flu-like symptoms (“Benzo flu”)

Flushing

Formication

Fuzzy feeling in head

Gait Abnormality

Gastritis

Glassy eyes

Goosebumps – very visible to the eye

Grinding teeth

Hair Changes (loss, thinning, dullness)

Hallucinations

Headaches

Heartburn

Heavy arms and legs

Hemorrhoids

Holding onto the walls in the shower

Hypersensitive Senses

Heart Palpitations

Hormonal Imbalances

Hot Flashes

Hurts to wear clothes, a car seatbelt

Hypersensitive (unable to watch the news, see films, read the newspaper) Hyperactivity

Hyperacusis (profound hearing sensitivity, hurts to talk on the phone, music, etc.)

Hypersomia (sensitive sense of smell)

Hyperreflexia (‘jumpiness’) Hypersensitivity to being touched

Hypersensitivity to light, sound, and other stimuli

Hypersensitivity to stress

Hypertension (elevated blood pressure)

Hyperventilation (over breathing)

Hypnologic (hallucinations, sleepwalking)

Hysterical and inappropriate laughter

IBS – irritable bowel syndrome

Impacted bowels

Impairment of motor coordination Impotence

Inability to comprehend the simplest things

Inability to concentrate

Inability to cope with a lot of information Inability to draw a satisfying breath

Inability to make a decision

Inability to read or write

Incontinence, frequent or urgent need to urinate, unable to hold or pass urine Increased saliva

Indigestion

Insomnia

Intense fuzzy feeling in the head

Intense jaw pain

Intrusive Thoughts

Iris in eyes changes color

Irrational rage

Irrationality (in general) Irritability

Jaundice

Jaw, tooth, neck and shoulder aches and pains

Jaw tension, clenching, teeth grinding

“Jelly Legs” – weakness in the legs

Jerks in arms, legs fingers

Joint aches and pains Joylessness Jumpiness

Lack of concentration Lack of coordination

Left/Right-sided symptoms

Legs arms and head very heavy Leukonychia (whitening of nails)

Libidinal changes – variances in sex drive

Loss of balance

Loss of concentration

Loss of confidence

Loss of control of movement

Loss of interest in people and/or things Loss of memory (short and/or long-term)

Loss of self respect

Loss of taste or metallic taste (or other strange tastes)

Loss or changes in appetite

Lung pain

Memory Probelms

Menstrual Problems

Metallic Taste

Mood swings

Muscle aches

Muscle spasms

Muscle weakness

Nausea

Nervousness

Nightmares

Night sweats

Numbness/Tingling

Obsessions and obsessive behavior

Orgasm changes

Outbursts of aggression and rage

Pain

Painful scalp

Panic Attacks

Paraesthesia

Paranoia

Paraesthesia

Perception Distortion

Passing gas continually

Phobias

Post Traumatic Stress symptoms

Postural orthostatic tachycardia syndrome (POTS)

Premature menopause

Psychotic symptoms

Racing Thoughts

Rapid blinking of the eyes

Rapid weight loss

Rashes on skin

Reading/Comprehension Problems

Repetitive Thoughts

Restless Legs

Scalp Pain

Shivering

Sinusitis

Speech difficulties

Swallowing difficulties

Tachycardia

Teeth Pain

Thyroid disturbances

Ticking

Tinnitus

Toxic naps

Tremor

Twitching

Urinary Problems

Vertigo

Visual disturbances – waves, sparks, flashes of light, seeing spots, floaters, blurry

Vomiting

Weakness

Weight Gain or Loss

Zaps

 

 

Further reading told me that the average length of withdrawal symptoms reported by people who have discontinued meds and whose symptoms had subsided was Fourteen Months. 

 

************

 

 

"It is more difficult to withdraw people from benzodiazepines than it is from heroin. It just seems that the dependency is so ingrained

and the withdrawal symptoms you get are so intolerable that people have a great deal of problem coming off. The other aspect is that

with heroin, usually the withdrawal is over within a week or so.  With benzodiazepines, a proportion of patients go on to long term

withdrawal and they have very unpleasant symptoms for month after month, and I get letters from people saying you can go on for

two years or more.“ 

 

-Professor Malcolm H Lader, Royal Maudesley Hospital, BBC Radio 4,

Face The Facts, March 16, 1999.

************************************************************

 

 

There are more if you look for things like benzo withdrawal peer support studies.  I should have checked these sites first. 

 

 

 

I wish you all good luck and good health.

[[Gi...]]

App,

 

It’s a shame that you are going or have gone because your last post was useful to those in need, despite it being such a show of the ‘one-upmanship’ that you so despise.

[[so...]]

App,

 

You are entitled to “find” and “believe” whatever studies and statistics about withdrawal that give you comfort.  To say that you have not benefited from long-term people’s posts (and PMs) is discouraging to me personally because I have tried my best to reassure you.

 

On a forum of this size, you will find a huge array of different types of posts.  To characterize this entire forum with generalizations that it is overall unhelpful to you is unfortunate.

 

I hope you find whatever it is you are looking for that soothes you and keeps you hopeful.  There is no reason to fear this process.  Healing is taking place and, someday, when you are on the other side of hell, you’ll experience heaven. 

 

Good luck to you,

 

Sofa

 

 

[[th...]]

There are a number of studies:

 

https://en.wikipedia.org/wiki/Benzodiazepine_withdrawal_syndrome#References

 

But, one has to have access to them and enough education to understand them. I don't have either.

[[...]]

I agree with app in some areas how this forum is organized and monitored (or lack of monitor by moderators if there are any). It can be dangerous for everyone providing advice based on their own experience without experieced staff to monitor. The web design is not very user friendly either, for example, I can't figure out how to find the topics i read/posted unless there are new posts to it.

 

The value so far I found is, a platform for everyone to post for venting, validating, and getting encouragement from the collection of success stories.

 

I feel the site is more for information sharing not for seeking guidance.

 

Just chime in with my feedback for hopes of possible improvement, not in any sense to complain as i know this is a volunteer based forum only, staff members are doing what they can.

[[so...]]

4mom,

 

“I feel the site is more for information sharing not for seeking guidance.”

 

That is exactly its purpose.  Forum rules state no advice should be given.  Just personal experiences.

 

Sofa

[Guest [So...]]

4mom,

 

“I feel the site is more for information sharing not for seeking guidance.”

 

That is exactly its purpose.  Forum rules state no advice should be given.  Just personal experiences.

 

Sofa

 

Well advice is given all over the place on this forum with some of the “experts” here saying you should go cold turkey and that tapering slowly is terrible.  Then they insult people.  🙄🙄🙄

 

Anyway that was my experience the first week I came here, read posts from this lady getting all like “I’m a nurse and you should listen to me because I’m an old warrior” blah blah blah.  Rules oh sure, that’s a total joke. 

[[de...]]

Thanks monitors for doing a great job after enduring, possibly still enduring benzo withdrawal yourself. 

 

I think the forum is (also) a good place for people to post symptoms in the hope that some empathic research team has all the info in one place. 

 

Vale Heather Ashton. 

 

Dee

[[so...]]

There are a number of studies:

 

https://en.wikipedia.org/wiki/Benzodiazepine_withdrawal_syndrome#References

 

But, one has to have access to them and enough education to understand them. I don't have either.

 

Think, I don’t have the ability to understand all these studies either, and probably never will.  I’m not interested, nor do I want to invest the time reading studies that have just as many other studies that overturn the first ones.  Ha!  I just want to get better.  That’s enough “understanding” for me. 

 

Sofa

 

[[pi...]]

Hello Appoggiatura,

 

I hope you don't leave the forum, but I understand if you do choose to do this.

 

Good morning,

 

I have decided to leave this site because I'm really finding it quite unhelpful and somewhat disconcerting.  Too many forum rules are being stretched or broken, and those in long-term recovery do not seem to be responding and/or helping those in early withdrawal or during tapering.  There are too many posts that seem to end up in a 'show of one-upmanship' whereby each post seems to want to 'best' the next.  As well, I've seen too many amateur diagnoses and blatant unsubstantiated advice being thrown around on here.  That's just dangerous.  The one thing I've noticed the most is that people keep saying there are no studies or information on benzos and withdrawal for one to get any idea what WD symptoms are or for how long these symptoms last.  I have news.  That's incorrect. 

 

We have a small team here at BB comprised of all volunteers.  All of us have things going on in our life outside the forum but try to offer help when we can.

 

We rely on members to report posts that might be contrary to forum rules and guidelines. This is a large forum with many boards. There is no way that a small team can read every post. 

 

Prescriptive writing is expressly disallowed so again, we need "a little help from our friends" to bring these issues to our attention.

 

Most people going through withdrawal are very sensitive and have a tendency to overreact, I know I did.  We also allow for a good amount of healthy debate.  Years ago the forum was far too heavily moderated and many people felt stifled, unable to offer an opinion.  No one has to agree, but respect for others is paramount.

 

Again, I hope you reconsider, fellow grace noter!

 

PG 

[[so...]]

Yes Sonic,

 

The team is short-handed now and they pretty much have just enough time to respond to help desk reported posts.  When you run across posts like you described above, please hit Report Post and let the Admins take care of it.  That’s how we members help them keep the forum running smoothly.

 

Sofa

[[so...]]

PG,

 

Ha.  Great minds think alike.  You beat me to the punch.  Didn’t see your post before I wrote mine.

 

Sofa

[[pi...]]

4mom,

 

“I feel the site is more for information sharing not for seeking guidance.”

 

That is exactly its purpose.  Forum rules state no advice should be given.  Just personal experiences.

 

Sofa

 

Well advice is given all over the place on this forum with some of the “experts” here saying you should go cold turkey and that tapering slowly is terrible.  Then they insult people.  🙄🙄🙄

 

Anyway that was my experience the first week I came here, read posts from this lady getting all like “I’m a nurse and you should listen to me because I’m an old warrior” blah blah blah.  Rules oh sure, that’s a total joke.

 

Frankly, I don't think I've ever seen a post that mentions that tapering slowly is terrible. Would you point out the exact post so we can deal with it.

 

If you feel a post is contrary to forum rules and guidelines, please report it.  As I mentioned earlier, our small team can not possible read every post on the forum.  Additionally, opinions are welcome as long as they are stated as such.  Sharing ones experience is also welcome. 

 

Each person must chose their own path to benzo freedom.  Our mission is support. I don't know where I'd be without the information and support I received from very kind and caring people.

 

pianogirl

[[pi...]]

PG,

 

Ha.  Great minds think alike.  You beat me to the punch.  Didn’t see your post before I wrote mine.

 

Sofa

 

It's called simultaneous posting! 

[[Ja...]]

The info is this post was oddly helpful. To each their own though. No hard feeling here for sure. I hope you find peace and heal.

 

As far as the site goes I think it’s great. I think it is nice that we are treated as adults and allowed to bend or break the rules. It seems the moderators only step in when really necessary. It allows us all to be ourselves and speak freely. I like the environment here. Everyone handles themselves very well and not even considering our circumstances. It’s a fine group of people here.

[[so...]]

Jack,

 

I’m not a fan of breaking the rules—too much work for these dear Admins.

 

BUT

 

 

for all the other nice things you said.

 

Sofa

 

 

[[Ma...]]

I am here since 2016. No matter how I felt I supported others here on the board each night.

I saw other members doing the same and they are still here also.

I cannot understand the statement the the elder ones do not support the newbies.

It is a big big board with lots of sections and members.

 

[[...]]

Most posts I read are sharing own experience only.

 

I did see quite a few posts from a popular member saying 0.5mg valium has no therapeutic effects and strongly encouraging ppl to jump purely based on own experience. It's especially risky as ppl tend to believe the 'expert'.

 

 

 

 

[[Ma...]]

Most posts I read are sharing own experience only.

 

I did see quite a few posts from a popular member saying 0.5mg valium has no therapeutic effects and strongly encouraging ppl to jump purely based on own experience. It's especially risky as ppl tend to believe the 'expert'.

 

WOULD YOU PLEASE WRITE DOWN THE NAME OF THE "FAMOUS MEMBER".

How the hell shall I know about whom you are talking about.

The best would be to link the post so that mods and others can react.

 

I am a famous member, I thought :laugh:

[[so...]]

Marigold,

 

You are famous in my book, darling.  LOL.

 

Sofa

[[Ma...]]

Marigold,

 

You are famous in my book, darling.  LOL.

 

Sofa

 

I am poor and homeless. But I am famous.

[[de...]]

We all deserve the medal of fame enduring as we do.  🏆

 

Dee

[[...]]

That's the problem with this forum, can't find the old topics I read before.

 

 

[[Ca...]]

That's the problem with this forum, can't find the old topics I read before.

I hear you 4mom.. -They were the two easiest “pop quizzes” eva..!! 

But im not going to call people out today because I know the team has put some effort into the matter and probs some we dont see.. Also, for every “bad” they both do plenty of “good” imo...

-Not to mention that im probs far from perfect myself..

When these personal opinions start to get to me too much, I just take a break for a while...

 

Mornink.. -think im awake now..

 

One mans poison is another mans pleasure...??

 

 

[Guest [So...]]

4mom,

 

“I feel the site is more for information sharing not for seeking guidance.”

 

That is exactly its purpose.  Forum rules state no advice should be given.  Just personal experiences.

 

Sofa

 

Well advice is given all over the place on this forum with some of the “experts” here saying you should go cold turkey and that tapering slowly is terrible.  Then they insult people.  🙄🙄🙄

 

Anyway that was my experience the first week I came here, read posts from this lady getting all like “I’m a nurse and you should listen to me because I’m an old warrior” blah blah blah.  Rules oh sure, that’s a total joke.

 

Frankly, I don't think I've ever seen a post that mentions that tapering slowly is terrible. Would you point out the exact post so we can deal with it.

 

If you feel a post is contrary to forum rules and guidelines, please report it.  As I mentioned earlier, our small team can not possible read every post on the forum.  Additionally, opinions are welcome as long as they are stated as such.  Sharing ones experience is also welcome. 

 

Each person must chose their own path to benzo freedom.  Our mission is support. I don't know where I'd be without the information and support I received from very kind and caring people.

 

pianogirl

 

Well this crap was being posted by the Nurse expert in SUCCESS STORIES and went on and on before anyone said anything about it and obviously plenty of others thought she was handing out terrible advice and saying scary stuff like tapering is as bad as going cold turkey.

 

And then she began to trash talk random fat people she saw while she was out shopping, IN A SUCCESS STORY?!  How is that supportive?  I call that insulting people!  Fat people here like me want to get well too. 🙄🙄🙄

 

At least it got moved to be a blog but she still says crazy stuff and I can’t even unsubscribe to it.

😫😫😫

 

I saw several things today that really bothered me. I went to our Goodwill Thrift store. Outside, a very obese child was sitting on the grass, staring at his cell phone. He looked utterly unhappy. Later on I went to Publix, one of our Florida supermarkets. This ENORMOUS  woman managed to get out of her car and wobbled and jiggled her way slowly to the doors. I have never seen such a huge woman. Perhaps over 3 feet wide, and probably about 500 llbs. It was plain that just walking was extremely difficult for her. I wanted to  cry for her. Once inside she managed to get into a ride on cart. And when I left, this very obese teenager was sitting by the door, staring at his phone.

 

 

Okay back to you. If I were in your shoes I would speed up the taper a bit, and just let the chips fall where they will. This stuff is confusing, but from what I have observed over 7 years here is that people who taper have just as bad wd symptoms as people who go ct. My mind does say to me, "Well, why bother to taper at all?" I assume it is to try to prevent the unlikely hood of seizures, but it sure doesn't seem to make wd symptoms any better. Cold turkey has this weirdly negative overtone on this forum and most other benzo sites but in all truth, it is NOT that bad a way to go. Yeah, my withdrawal was horrific but so is yours! I tend to feel that mine was so bad due to being on benzos for thirty damn years, and taking enormous doses. I honestly do not think I had a bad wd because I went CT. But all of this is guesswork as no one really knows the entire truth about benzos yet.

Keep in touch, I want to know what happens with you, please!

 

What the actual fuck?!!!  What is WRONG with you?!!!

 

East, Dear Lady, may I suggest you take another break from posting on BB? Some of your advice appears questionable at best.

 

best wishes

OMG...East are you for real!! 

 

Okay back to you. If I were in your shoes I would speed up the taper a bit, and just let the chips fall where they will. This stuff is confusing, but from what I have observed over 7 years here is that people who taper have just as bad wd symptoms as people who go ct. My mind does say to me, "Well, why bother to taper at all?" I assume it is to try to prevent the unlikely hood of seizures, but it sure doesn't seem to make wd symptoms any better. Cold turkey has this weirdly negative overtone on this forum and most other benzo sites but in all truth, it is NOT that bad a way to go. Yeah, my withdrawal was horrific but so is yours! I tend to feel that mine was so bad due to being on benzos for thirty damn years, and taking enormous doses. I honestly do not think I had a bad wd because I went CT. But all of this is guesswork as no one really knows the entire truth about benzos yet.

Keep in touch, I want to know what happens with you, please!

 

What the actual fuck?!!!  What is WRONG with you?!!!

 

East, Dear Lady, may I suggest you take another break from posting on BB? Some of your advice appears questionable at best.

 

best wishes

OMG...East are you for real!! 

 

 

I agree that is terrible advice. I would never advise a C/T over a sensible taper .